Home!!!

I am home and the procedure went well. I have most of the results, wont get the biopsies back until friday. I have enlarged vocal cords, what looks like to be a raging yeast infection in my esophagus, and significant gastritis. The good news is that my fundoplication is intact and tight, the not so good news is the gastritis and the yeast. In theory I shouldnt have any gastritis going on since I am on some pretty powerful antacids three times a day, so I am still a puzzle wrapped in a mystery covered in an engima.

Frustration and Emotions

I am having my EGD tomorrow and to even go under with conscious sedation I need a bolus dose of steroids either through the IV or IM, in a muscle. I call GI to make sure that the medication is added to the orders well they want further instruction/orders from my endocrinologist before adding it to the orders. I thought for about 15 minutes about just doing it at home IM, but since my level of blood thinness is not the greatest right now in consistency (I am not supposed to give it if the number is greater than or equal to 3.5) So I prayed before dialing the number for the endocrinologist since their office is ridiculously slow and hard to get ahold of the nurse. I actually got the nurse and got a phone call back that she had spoken with the right person, Danielle, and had faxed a copy of the order to the doctors office.

Emotions, well this month is just a hard month in general. My dad died this month and also his birthday would be this month. He would have been 51. I cant believe that it is now 7 years. Somedays it feels like it has been forever and somedays just yesterday

I am NPO after midnight just to try and make sure that my stomach is actually empty when I go under, the procedure time is 330 and we have to be there at 230

August 23 2009

August 23, 2009

Oh where to start, the medical adventures have continued and have gotten to the point that I am just plain tired of dealing with it and spending so much time making sure that nothing goes wrong or gets missed.

I have been throwing up and having problems tolerating my medications. It has even gotten to the point of me having to pull over on the side of the road to puke while I am driving or at least trying to drive.

My INR, level that shows how thin my blood is, has not stayed stable and I am getting to the point that I am just sick of it all. Right now it is 1.8 and it is supposed to be between 2 -3.

G.I. well that is the huge headache for the moment. My whole GI tract doesn’t work right and the way it works isn’t predictable going from one extreme to the other and refluxing through my fundoplication and with 3 very strong acid reducing medications.

On Wednesday the 26th I will be having an EGD, scope from the top of the GI tract to the beginning of the small intestines taking pictures and biopsies, done. The major concerns are my dysmotility and having residual junk in my system blocking. The sedation should go fine since it is my normal medications for conscious sedation, Demerol and versed, but getting the right dose of the drugs in my system since I have such a high tolerance for pain medications so there is no telling how much of the drugs that I will actually need to not be awake and aware of what is going on.

On the 25th I go back to the dentist and get my new and improved teeth guard for my TMJ. Right now I have a hard acrylic splint that doesn’t fit right and has chips in it. I am hoping that I will not have to pay anything because I just don’t have the money for it

Pain management appointment should be sometime this week or first thing of next week. I have got to come up with the money for my account balance I am hoping that they will let me just pay half of the amount and increase the next few payments by a small amount to get me back on track for getting that bill paid off. I have a great desire to stay on their good side since they are the doctor that has gotten me to the point that I am most comfortable and have more functioning tolerable pain level times

I have got to reschedule the appointments that I missed last week due to puking my toenails up, have got three or four of them, cardiology, podiatry, neurology, and a lab draw, and calling GI to get IV solucortef ordered as one of my pre meds for Wednesday. Why do I need to have the extra steroids, adrenal insufficiency due to my panhypopituitarism… get too low on that and you get problems with fluid balance, energy, heartrate and blood pressure all not good things to happen.

Tomorrow we will start the switch over from Coumadin to Lovenox to maintain my coverage for blood thinners to prevent more clots but the lovenox has less risk for bleeding during the procedure when compared to the Coumadin. I am not looking forward to having to use the lovenox again because the last time we did this I ended up with HUGE bruises that took 6 weeks to go away.

I will be starting back to work a couple days a week on Monday just for a few hours but it will be so nice to actually be able to use automatic online bill pay to try and get some of my medical bills and student loans out of default. That is another project of mine trying to figure out who to pay and in what order, that is what I will be doing for the majority of my more functional hours for the next 2 weeks.

I have one more major medication pick up this week, shooting for Wednesday for the pickup day since we will already be at the hospital I am just hoping that we will get out of there under 200 bucks

Emotionally I am just totally drained, and getting the information that Social Security needs for my application has really gotten to me, the massive amount of medications, doctors, hospitals, procedures, lab draws and other tests, and the medication schedule that I follow

I have also got to get ahold of my urologist’s office to get an increased bladder spasm medication dose, it feels the best every 12 hours but my current prescription is only for once a day.

Podiatry I need to have the follow up visit for my ingrown toenail on my right side that is still oozing and icky looking and have him do the same thing on the other foot while I am on the lovenox coverage to try and minimize the bleeding when it is done.

Prayer Requests

1. Protection from the formation of more clots when off the Coumadin
2. Medication used for sedation for the procedure on Wednesday would work well
3. Patience and peace and tolerance for being NPO for atleast 14 hours
4. That there will be clear answers as to the next step in treating my reflux
5. I get all of the information that Social Security wants so I can send that off on Monday.
6. That the boys that I take care of will behave for me, I haven’t taken care of them since the middle of June and one of them the youngest has difficulty dealing with change
7. Patience for my mom when she has to take care of me on Wednesday, sometimes I am not the nicest person after sedation

It is after 2 in the morning so I better sign off.

Melinda

My Magic Number

The magic number for today is 2.7, which is in the therapuetic range of 2-3 but I have a feeling that it wont stay the same, in range, all the way until wednesday when I get rechecked.

I went to the gym and was going to work out, I am significantly overweight and need to work on that desprately for health and self esteem issues. My pulse rate was too high to be cleared to work out. I will try again tomorrow my target time and target speed are both crazy slow but that is where I need to start

Migraines shut this day down again. I am getting tired of even having the ability to type the dang word.

It was anywhere between 102 to 108 today for the high no wonder it is toasty.

Melinda

Boy has life been busy

When I last posted I was still in the hospital as a patient trying to get the newest development in my healthcare journey under control....the multiple (minimum 4 2 on in each lung) bilateral pulmonary embolisms or is it emboli?

Life has yet to slow down for me family or me for that matter

Lets start with my bubba, who is stationed in Germany with the Army. He had a recheck for his knee and his ankle. The left knee and the right ankle. His ankle is healing okay he broke a bone in it when he was home in the states on leave best we can guess. His knee is another matter it is not healing appropriately so they are going to have to try a meniscus transplant in Germany and he will recover over there since he has friends both military and non who can help to take care of him and make sure he does not do too much.

Mom- she spent a couple of nights in the hospital with an aggrevation of her inner ear edema due to the stress of life in general and me and my brother. It hit her at work when she was down in the ER where she was floated to. She got real dizzy and was sitting down at the desk doing nurses notes and she had to grab on to the desk to stop the sensation that she was going to fall over. There was nausea and vomiting and fears of Meiners Disease or syndrome but since she doesn't have the hearing loss her diagnosis is still the less serious inner ear edema which can be treated with 2 simple medications.

Me- My INR still hasn't held itself in the therapuetic range for what I am being treated for. Therapuetic is 2-3, and my latest one is 3.3 that is what it was on monday I get it checked again tomorrow and it is going to be on the low end of acceptable to out of range just based on symptoms and side effects that I get with the coumadin being out of range. Migraines are out of control in both frequency and duration and depth of pain. We increased the one preventative that is worth the risk of the side effects and the sedating effects and have to give it a minimum of 2 weeks to get therapuetic. therapuetic seems to be a popular word in my life lately. Other problems are high heart rate, both at rest and activity, shortness of breath, and chest pain.

So if these areas could be thought of and lifted up to the God of Ages who can answer all our requests I would appreciate it.

Melinda

Tomorrow is the Day

Tomorrow is the day for me becoming even more of a bionic woman, with the filter and the fact that I have a shunt to drain the fluid off my brain. I don't have a time for the procedure yet, will probably not get it till tomorrow sometime. I am not even sure if I will be NPO after midnight tonight because the doctor assured me that I will get some medication to help me relax and get to the point that I am more comfortable.

Right now I am waiting for my care partner to get finished with her vitals and come back because I would like to go for a little stroll and need some help to do so. Also we are going to get a good popscile or two out of the staff fridge that my mom hid there since the ones that are in the patient fridge have melted and re-frozen which makes them not taste so hot.

And since my fluid intake is down and I love popsciles that is an easy way for me to get more fluids in and avoid being hooked up to an IV in addition to telemetry which isn't a portable device it is like an IV pump with a bunch more cords and oxygen to keep me from de-satting which I do often because my lungs aint working the greatest due to the blood clots.

thanks for the prayers and good thoughts, brain surgery doesnt really freak me out but this is, I am trying to rest in the knowledge that God is in control and will walk me through this latest trial but sheessh I sometimes wish that God didnt think so highly of me....you know the God won't give you more than you can handle.

Mindy

Change of Plans Sorta

There is a slight change of plans I wont be going home on Monday, they will be placeing a special kind of filter to try and be on the safe side to block the ability of blood clots to get to my lungs. And to be able to place the filter they had to stop the coumadin and will restart it afterward the placement of the filter.

I am not that thrilled that I will be cut on the side of my neck and be awake throughout the procedure at least according to how the procedure was explained to me because it doesnt sound that comfortable to put it simply.

again sorry it is so short it is hard to type with my glow finger and IV spot.

P is for Pulmonary Emboli

From Wikipedia

Pulmonary embolism (PE) is a blockage of the pulmonary artery or one of its branches, usually occurring when a deep vein thrombus (blood clot from a vein) becomes dislodged from its site of formation and travels, or embolizes, to the arterial blood supply of one of the lungs. This process is termed thromboembolism.
Common symptoms include difficulty breathing, chest pain on inspiration, and palpitations. Clinical signs include low blood oxygen saturation (hypoxia), rapid breathing (tachypnea), and rapid heart rate (tachycardia). Severe cases of untreated PE can lead to collapse, circulatory instability, and sudden death.
Diagnosis is based on these clinical findings in combination with laboratory tests and imaging studies. While the gold standard for diagnosis is the finding of a clot on pulmonary angiography, CT pulmonary angiography is the most commonly used imaging modality today.
Treatment is typically with anticoagulant medication, including heparin and warfarin. Severe cases may require thrombolysis with drugs such as tissue plasminogen activator (tPA) or may require surgical intervention via pulmonary thrombectomy.

this is my second go around with PEs and it looks like there is not going to be a smoking gun as to the cause just like they couldnt figure out a cause the first time.

treatment will be an injectable blood thinner for a day or two and then getting my coumadin level, coumadin is the life long medication that will hopefully with Gods grace from happening again.

this is going to be it for a while because of where my IV access is, on the inside of my wrist.

Two posts in one week...so far

Tomorrow I see the pain management doctor for an urgent appointment, the urgent appointment only took a week to get. It doesnt help that the appointment is at 730am in the morning, especially when you are either not getting to sleep or waking up in pain or waking up to have to go to the restroom multiple times per night. I have my alarm clock set for 615 I took my shower tonight to be able to get a few extra zzzz.

We are going to try and tackle multiple issues at this appointment. Going up on my Lyrica which should help with the nerve pain and possibly some of the extra muscle pain like it does with fibromyaglia patients. Getting a prescription for prescription strength motrin. Getting something for my migraines, fiorcet or midrin would prefer the fiorcet but will take anything that can help right now. A prescription sleep aid there is only so far and so long melatonin will take you and I am at that point. And adjusting the quanity of my actual pain meds, with so many migraines this month cycle for my pain meds they have been drained.

It doesnt help that the nerve ablation is starting to wear off, I think that that is part of my problem too, they were only meant to last six to 12 months and I had them done in january and february so it is about time.

I am frustrated and tired, I was supposed to see my manipulative medicine doctor today, but waiting for 30 minutes past my appointment time when the doctors office has a policy that if you are 10 minutes past your appointment time you have to reschedule the appointment. that fact made me very angry that I have to respect their time so diligently but they cant seem to respect mine, and this is not the first time that she has been more than 20 minutes late, she has been 20 minutes late or more every appointment that I have had. My first appointment was almost 6 hours long for the total time that I spent in the office, I actually took nearly an hour long nap in the waiting room because no one was ready and bothered to call me back...thank goodness for the good thing of an iPod. I swear the only way that I survive doctors appointments and the boys in the car is the iPod

Sometimes I just dont understand. This is going to be first about a little boy, who is not very little who met God today. He had cancer but didnt die of the cancer he died of veno occulsive disease, which affects the liver primarily. The hospital that he was at did not fight to get the one drug that has really shown promise at treating the condition, so he got it too late...that is the doubt that has to be going through the parents mind right now, the doctors didnt fight for him to get it it was family and friends and total strangers who got the drug for this adorable boy.

Now for me my pain management has been poor for the past 2 weeks I called last week to get an urgent appointment to get a med change and additional medication for my migraines, I am actually starting to have a female cycle again and that is making me more miserable, 2+ years without one makes you kinda forget what a cycle is like. But the earliest appointment that I could get was tomorrow at 7:30am but I had to take the tuesday appointment for the same time. I will be asking for a prescription for fiorcet and for prescription strength motrin since even with the hospital discount 800 mg of motrin three times a day gets expensive. and will also see about going up on my lyrica.

this week is going to be expensive, I will have to pay out around $50 for balances that I already have at the 2 doctors that I will be seeing thankfully they should be paid at 100% since I have finally met the out of pocket maximum for the year. the only doctors that I have that wont be paid at 100% are my OU physicians associated ones since they are not completely preffered providers.

After Surgery

Sorry it has taken me this long to post an update, but life has been a bit crazy trying to recover from this surgery. It seems that each time he has to go back in it takes me longer to recover, pain and nausea wise.

I was in a sum total of 3 rooms 4 if you count the emergency room bed. Its a little freaky when you realize that they think you are sick enough to need the capabilities of a trauma room. And mannitol is not a fun drug it made my arm hurt like the dickens. I was admitted to intermediate care because of my high heart rate and pulse rate, the care in IMC sucked to put it nicely. went from that room to surgery, and spent 8 hours in recovery waiting on a room in ICU, also because of my high heart rate, blood pressure, and to make sure that I got the great care that I deserve...my surgeon has made a promise to keep me comfortable if/when he has to go in again, I got great care there the only frustrating thing was that I did not have a television that got all of the channels. I was transferred from ICU down to the women's center a.k.a. pregnant ladies floor, and spent 1 night there and was discharged on thursday

I am now in the process of trying to lower my intake of pain meds enough to have more functional hours with the least amount of pain especially since I have to make what I have last until the middle of the month when I can get in to see pain management, I supppose if needed neurosurgery might refill my pain medications just once but I dont want to abuse that privelege.

Right now I am on the phone with my primary care physician's office trying to track down the referral to a cardiologist that I need to see because of my heart rate and blood pressure being so out of whack. The one that mom suggested doesnt handle simple issues normally like the tachycardia and blood pressure being so out of whack, he does more of full blown heart failure, which praise the Lord I dont have that problem right now.

Mindy

surgery is soon

I probably have the 915 surgery slot, the nurse said that they were trying to come and get me just a few minutes ago.

Mindy

Not Good News

I was right, yesterday at the neuro opthomologist I got the worst case scenerio. He walked in and after the normal plesantries his first question was have you been having headaches, I said yes but they havent been my normal high pressure headache. they have been more of a migraine.

He asked about vision changes and I said yes that it had even been going completely black but that was more recent in the last few days.

He said your eyes are the worst I have ever seen them, I asked are you sure. He said your visual field has changed, not for the good, your basic eye exam has changed and you need to go directly to the emergency room your shunt has failed and aint working.

I made the trip to the er in record time for rush hour and the rain. they took me back very quickly and got ahold of my neurosurgeon in fast time. I was direct admited to intermediate care, step down from ICU (intensive care unit), because of my blood pressure and pulse.

I am waiting on the good PA to make rounds, at least I think I will be seeing the PA might get the good doctor who knows. And change my pain meds to something stronger because I have yet to sleep thanks to the pain, and tell me the game plan for today.

I know todays plans include surgery but I am not sure what time will post again when I know for sure.

Melinda

Nervous

Nervous sums up my mood tonight. I am nervous about the doctors appointments that I have this week, nervous about what they are going to say, nervous about what changes I am going to have to do to continue in my state of health, nervous about driving downtown to Pull A Part to finish what we started back in december.

Tomorrow I see neuro opthomology. I love my neuro optho but with the vision changes that I have had in the past month I am fairly sure that the news is not going to be the best. Worst case scenerio my papilledema is back and my cataract is growing, best case my glasses prescription needs to be changed.

Tuesday I am supposed to see pain management I think it is on tuesday, I will call tomorrow to double check. This will be refills of current medications, and seeing about adding something else to take for my migraines....the medication that I have right now I can only get 9 tablets per month and I am averaging between 12-15 migraine type headaches.

Wednesday I go back to the manipulative medicine doctor for another session. I have partially gotten her to do list done, made 1 of the 2 appointments that she wants me to do. I have gotten on the schedule for the TMJ expert at the local university to see if there is anything that he can do to help my jaw which in turn would reduce my headaches, the tension ones primarily.

Friday I go back to the urologist to get the results of my urodynamics test. I know that I flunked it in at least 2 areas. I am not sure what the plan of action will be but I surely would appreciate one.

Monday of next week I see the cardiologist, another new patient appointment to try and deal with the fainting.

I am trying to do this whole blog thing at least once a week...it seems to help my mood and emotions if I take the time to put the words to my computer and get it out.

This week I work this weekend, yuck at least one day is down and I only have one more to go and then I am off until wed thurs and no weekend duty woohoo!!! I should really be asleep right now but I dozed and rested too much today so the meds that normally take care of my pain and knock me out arent doing the trick.

I have neuro opthomology on monday that is the first of the appointments, I have manipulative medicine doctor one day this week I think the 29th, and I have pain management on the 28th and I see the urologist on friday 5/1 to get the plan of action with my bladder issues...which there are more problems that I wasnt aware of but such is life. I see the cardiologist on the 4th and the TMJ dentist on the 15th. And somehow I am supposed to fit in a trip to an orthotic specialist to get molded for a new set of orthotics.

Now here is where my heart is heavy, one of the kids that I encourage as part of the COLEs Foundation Prayer team got news that his labwork showed 2 blasts in the smear, it is too early to know for sure if he is relapsing but right now their hearts are heavy with the thought of relapsing less than a month and a half off of treatment for his leukemia. The doctors are hoping that the bone marrow was just spitting out a few weird cells due to the viruses that he had been dealing with. They will redo the lab work in 2 weeks

Week ahead

This week is going to be a bit busy, I have got 2 appointments with different doctors offices, actually to be technically correct 3 since one is a two fer the price of one trip. Urodynamics and go to the urologist afterwards, then GI the next day. I work Monday and tuesday and will get paid on tuesday I think for the week. I am not too sure if I work this weekend or not, honestly I hope that I dont work this weekend, I need time to clean up my room and fold laundry and make everything ok for my aunt sharon coming.

Next week I see my neuro opthomologist, ready to get my lecture there for not calling with my visual symptoms that I have been working with and functioning with well sort of. I will see my manipulative medicine doctor next week also along with pain management

Another kid got diagnosed with Intracranial Hypertension this last week and I am trying my best to help the family understand what is going on and they are just as relieved to have a name to call what all the symptoms that their child is/have been experiencing.

Dont want to tell my momma

I dont want to tell my momma that my vision is going in and out and has been doing that for over a week. You see I dont want to tell my momma because I have got to go with her to take her home she is going to get some happy drugs and wont be safe to drive home. We are going to stop and get something good to eat for slunch (our cross between supper and lunch)

I am not too concerned about the driving home because it is usually better when I am sitting down. I think the blood return from my lower body is crappy that is why I have been blacking out, feeling like I am going to black out, and my legs have been dropping out from under me.

I will make an appointment with my PCP for next week, and get referrals to cardiology and urology and to a osteopathic manapulator, for cranial manipulation to try and help with my migraines since neurology is basically useless.

Why not me? Why not now?

I have been through a lot in my life. I have a bunch of diagnoses for my medical problems, there is not a system in my body that does not have at least one diagnosis, most have multiple diagnoses. I am getting ready for a week chock full of medical appointments, only 4 appointments at the current moment but there is a need for another appointment or two.

Last week I was feeling very broken after I lost a job opportunity because of institutional policy regarding hiring a patient as an employee, that was not very clear when I applied for a "quick hire" position.

One of my newer self diagnosis that will be put to the test on monday when I see the new neurologist, is cluster headache/migraine. It will be great fun to see if he agrees with my self assesment. I also need to see if he would be willing to evaluate me for acquired Chiari malformatioin because of the bizarre symptoms that I have been having puts me highly suspicious that something else is going on.

Today I was supposed to go to church with my mom. But I have a major problem with our current church, I don't seem to fit anywhere and the critics of myself and my lifestyle are too much for me to deal with. No one seems to realize that I am fighting my own battle and I dont need the criticism of my fellow body of believers who are ment to support each other through problems and not to cause more grief

Tears wont stop coming

The tears just wont stop coming. I am not totally sure why but the simplest thing will make me boo hoo. I saw the dentist today and got a lecture since I hadn't flossed my teeth this morning, I did brush my teeth but how my teeth fit together to get the front teeth looking decent you need to floss them. I am holding tight, at least trying to, to the fact that I am doing the best I can when just putting anything in my mouth aggrevates my gag reflex and makes it real easy to start puking. I am just tired of fitting this battle and am to the point of being tempted to not see him again for 18 months or so. But I wont do that, I will see if I can get a Xanax to take before the next appointment because I really dred that place at the current moment.

I had ear tubes placed on monday and that was a challenge the numbing drops feel like fire when they are first placed, it takes a lot to screw up my composure when it comes to being ready for a medical procedure but I lost it and when the left side wasn't totally numb and I was feeling sharp pain when I wasnt supposed to feel anything but some pressure I was past not happy. But I honestly dont regret doing the procedure, my vertigo is better and I actually have had periods of time when my ears dont ring, and CPAP therapy at night is going so much better I have actually kept it on for all night for 2 nights in a row.

I have got to call my PCP and get scheduled for her to do something about the 2 ingrown toenails that I have right now. It is a chronic problem for me but since it only happens about 2 times per year it really isnt that big of a deal in the grand scheme of things.

I see my shrink in a week or two and if I am still this over emotional I will see if he would be willing to put me on a low dose anti-depressant. I know that there is a big risk for me to be placed on any type or dose of anti-depressant because of my bipolar disorder, but I need some happy help. And I will be going on a sleep aid at my next pain management appointment to try and make it where I can get 8 hours of solid sleep and have it not be interrupted 2-3 times in the night with the exception of last night when I only ended getting up 1 time.

Please pray for Anna as she has surgery today and is tired of being sick and tired of the headache that is honestly so miserable and difficult to cope with that you can take the worst pain in your life multiply it by 50 and you might get close to the pain and what effects it has your quality of life.

How can I be the most helpful and content person that I possibly can be? That is the question that I have for right now. I am tired of trying tired of fighting and I just want to be able to be content in my circumstances.

I am facing yet another procedure, tubes placed in my ears. The nurse who explained the procedure made me laugh when she said take some tylenol or motrin before the appointment to help with the pain. I take stronger stuff than just the OTC meds to try and keep my pain at a tolerable level. So I will be taking the stonger stuff on monday just to try and stay somewhat comfortable and out of my head.

I may call my PCP on monday and see if she will call in a single dose of Xanax or something similar just to try and help me relax because I am a little uncomfortable with the thought of the doctor going with a scapel into my ear canal. Especially when I have to balance my big body, got to be honest I aint supermodel thin, on an exam table that is less wide than a twin mattress.

I have to make another appointment with my PCP because since I had my shunt turned down to try and lessen the intensity/frequency of migraines and other similar headaches...my pressure headaches can cause migraines in me. The side of my neck that has the tubing on it has been swollen and painful to move. I have had one trigger point injection on that side which helped for about a day very much, since then it hasnt gotten as bad as it was before the injection but still is not very easy to deal with. I can atleast move my head with out having to move my whole upper body which is a big plus when I am trying to drive.

Yesterday I worked and had one of the boys with me the entire day, he woke up with a 101.0 temperature. I took his older brother to school, then went home to pick up my medicine since I was not going to be at home to take my meds, went to the pharmacy to pick up meds for the sick boy since I could payroll deduct there, then we went back to his house, called my ENT got an appointment for that day, went to the ENT appointment, went back to the pharmacy to pick up ear drops that I need to put in again when I am done typing this blog entry, went home let the kiddo sleep for another couple of hours, went to school to pick the older boy up, came home the kiddo went back to sleep upstairs when we woke him for dinner he was burning up with temperature 104.9 and I didnt wait for it to beep I took him up stairs and got him into a lukewarm bath I really didnt want to have a febrile seizure because he was so hot, or drop his body temp too quickly and trigger a seizure that way. I only let the bath drop his temperature by a degree and a half, then put him in undies and a pair of shorts and let him have his blanket back. I didnt put a shirt on him to facilitate the body's cooling off ability....no shirt was also used because I knew that he was going to wrap up in the blanket and I didnt was an extra layer to make him hotter.

I have got to check on the kiddo today to see how he is doing since grandma was planning on taking him to see the doctor.

Just got off the phone with the grandma, his highest temperature that the kiddo ran for grandma was 99 degrees. Of course he has be be a little stinker for me but behaves somewhat for her temperature wise.

The other appointment that I have for this up coming week is going to the dentist to get my crown fitted. It came in early so we are going to fit it early. This is another step in the process of getting me to where I can go for a work week over spring break to Camp.

There is a possiblity of me getting a part time medical assistant position with one of my personal physicians, scratch that angels, because he is my pain managment doctor. I am waiting on getting a phone call from the medical review officer that did my drug test. I know that I probably popped on the opiods since I am on 2 different pain killers that are both opiods.

Mindy

Just simply tired. I am tired of dealing with the pain, doctors, stress, symptoms of my medical conditions, and the normal stuff that people deal with....money and all that fun stuff (NOT)

I only had 3 doctors appointments this week. I use the word only because some weeks I have more than 5 and sometimes multiple ones on single days. 2 went well and 1 was not so much.

The not so much was the ENT appointment that was to check out whether or not I would be a good canadite for tubes since my frequency of ear infections is up to every 5 weeks with a 10 day cycle of antibiotics. The scheduler would not schedule me for any where near when I needed to be seen for having an active ear infection, I needed to be seen at day 4-6 post diagnosis but they wouldnt schedule me for any sooner than 10 days post diagnosis. They also wanted to do a test on my ear drums I gave them 10 minutes, 2 people to try, and was as patient as I could get. After 10 minutes I was crying and told the person multiple times to stop before the tech did.

The stuff that pain management did in clinic only helped for about a day and my scalp is still sensitive from where the needle was used. It doesnt hurt as bad as it did the first time that I had an occipital block done, so there is more hope in me trying that procedure again. It is a little hard to actually guage how productive and helpful it is since they cant do both occipital nerves because he wants to be really careful with the side that has my VP shunt on it because that is by far my lifeline and is my saving grace the majority of time if you just consider what modern medicine has done for me.

I will ask about the lidocaine/ketamine infusion that I have learned about from another IH family. I forgot to ask about it at my clinic visit, if it can help break the cycle of the pain from the migraine/cluster type headache I am game. I officially dont have the diagnosis of cluster headaches but from how they have presented over the past couple of months I am fairly sure that that is soon to be added to my many diagnoses.

I am still waiting on getting the letter that I need for my application for social security disability from my endocrinologist to go with binder and binder. Or I might just start the process myself by requesting the paperwork that I need to fill out and get the process to my first decision done quicker. I am just tired of waiting and it is getting frustrating knowing that I am such a burden for my mom with my medical expenses. She says I am not a burden but I can't help but feel that way when my medical expenses are easily 1 grand a month with cobra and medications.

The only really good thing that has happened this week is that I first got a phone call from Dr. A my pain management doctor to check on me and he wanted me to drop off a copy of my resume because he is hiring and because he is actively treating me he is more aware and understnading of my physical limitations. I made sure to ask him before I dropped off my resume the first time that he was completely aware that I do have some physical limitations but am one of the more dedicated and determined potential employees that he could ever get.

I am going to take the advice of one of my internet friends and take some time for myself today and relax and enjoy just laying in bed and watching Monk on my computer since Hulu.com is under maintaince still and cant set up an automatic queue like I can with my iTunes set up.

Mindy

Greatful and other details

I can only sum up what my feelings are for my pain management doctor with that word, greatful.

Dr. A and his physician assistant Julye are not ok with me being in significant pain. They said that at my first appointment that they thought that chronic pain was a major issue which was different from the thoughts of all of my other physicians, which I do have a bunch of them. I saw them yesterday as an urgent patient appointment, my next scheduled appointment to get refills on my medications was next week but I had a few issues that I needed to take care of with their staff, and was in so much pain from a migraine and neck pain...could barely move my head from side to side had to actually move my whole upper body to have as much visual range that I needed to see my blind spots when I was driving.

He did another occipital nerve block and a set of 2 cervical trigger point injections. The occipital nerve block and the left cervical trigger point hurt so bad my body tensed up and I started to have tears form in my eyes. He was very gentle and asked me multiple times "You okay Love?" I kept saying yes I will tell you if I need you to stop, right now I just really need to focus on my breathing, if you can help me with that I will be doing a bit better. So he started saying deep breath in and out and helped me to focus on my breathing.

Tomorrow I will go and see my ENT tomorrow to figure out if I am a good canadate for ear tubes to try and reduce the frequency of my ear infections and the resulting 10 days on antibiotics. It is rather ironic because this is the doctor that wouldn't place tubes when I was a young child, and he is the one who put tubes in my dad when he was in his 30s. But he is atleast willing to think about doing them now. I want to have them placed under general or atleast concious sedation even though I know that it can be done with just a local. I am just not that big on being in pain when there are less painful options available. This will make it the 3rd major procedure that I have done within the current calander year.

The Day After

Today is the day after the procedure, rhizotomy, that was done yesterday. And right now as can be expected my pain is worse. The muscle pain can be worse for up to 2 weeks thanks to the trauma of the procedure.

Bending, moving, lifting are all problematic. I have slept the majority of the day and am planning on resting/sleeping the majority of the day tomorrow. I am just trying to stay with my pain so it does not get out of control.

I got the bill for the right side today and it was just over 11k. with my estimated portion being 0 since it was done at an in network preffered provider. Got to love insurance even with the hoops that you have to jump through to make the insurance company happy.

I am currently in limbo with regards to my ears, have to wait until I have another raging ear infection so the ENT can see it for his own eyes and make the decision as to if I would benefit from tubes. He doesnt want to treat me like a guinea pig but I am not so thrilled about having to wait for yet another ear infection.

Mindy

Tomorrow is the Day

Tomorrow is the day that the next procedure will happen to get me closer to pain free, or at least tolerable pain so I am not so dependent on medications to lessen the pain enough for me to be able to function.

I am looking forward to the procedure with baited breath because the conscious sedation did not go very well last time. I in my opinion was far too aware of what the good doctor was doing. Not the most pleasent sensation poking a nerve intentionally.

Tomorrow's schedule will go something like this. Wake up with my alarm at 4:30am so I can take a nice long hot shower. Get dressed pull meds and hook my tens unit up since I will not be able to take my pain meds due to the medications that they will be using for the procedure. And the tens unit will help keep the muscles relaxed, it truely has been a god-send for the past couple of weeks. I will be able to take my steroids, and my thyroid medication and my acid reflux meds but that is it until after the procedure, and I am going to be pushing my luck taking prednisone without any food on my stomach but that is one of the medications that I can not miss, especially with the stress of a procedure on my adrenal glands that don't function due to my adrenal insufficency. And put on EMLA numbing cream as soon as I get out of the shower on 2 sites so whichever nurse I end up with has some choice and it wont hurt when they go fishing for IV access.

I will wake up mom about 5:15am or so so she has time to take her meds, get something to drink if she so chooses and get dressed.

We are supposed to check in at day surgery at 6:00 and my procedure is supposed to start at 7:30am. I will have the same team that I have had for the previous 3 procedures that this doctor has done. It shouldn't take more than an hour in the procedure room, closer to 30-45minutes but it is scheduled for an hour just in case. I should be in holding after the procedure for about 30 minutes that is about how long it takes me to wake up good enough to have something to drink and keep it down, although it is hard to puke anything up with my fundoplication.

Then I will go home take some pain meds and a muscle relaxer, put on my CPAP and go off into la la land again. It takes me about 24 hours to be back to totally normal and not have a drugged up outlook.

Thank you for your prayers, I am more nervous about this because of the not so hot experience with the sedation the last time.

Melinda

Occipital Nerve Block

Today I had an occipital nerve block done, to try and dull the pain of a migraine that has been going on for over a week. It is still helping. More tomorrow

I know I just posted but....

I know I just posted but after I posted I realized that there has been no mention as to why I am on steroids. I have panhypopituitarism, specific reason for the steroids is the adrenal insufficency part of the pan diagnosis.

In October of last year I went through a period of time where my body was not absorbing the steroids, which resulted in me feeling like crap, low blood sugars and no energy to put it simply. We switched from hydrocortisone to prednisone. And with me having another bout of not having the right blood levels we had to double the dose on my replacements.

I have been realitively stable so we decided that we would work on getting down to the appopriate physiological dose, which is 5mg and 2.5mg over a period of several months. Right now I am taking between 10-15mg twice a day so it is going to be at least several more months. Especially since the step down to 15 and 10 this week has not gone well

I will see pain managment tomorrow and hopefully have more than a couple of minutes with my doc, he is a very busy man but since there are a lot of openings tomorrow I am hopeful. I will be having an occipital nerve block. Which is a little bit freaky to be honest. And talking about a concern I have with the up coming procedure on 2/5 the sedation needs to be tweaked because I felt way to much in my opinion. And didnt have the nice out of my head experience where although you are aware that you hurt and are having something done to you you really dont care that much.

I will also see about getting the Prior Authorization done on the imitrex which I have been trying to get done for over a month.

There is a chance that he will also write for some more oral pain medication the fall on monday, the procedure last week, and the weather changes have all sent my pain into overdrive. I have kept a record of when I took the stronger pain meds that I recieved and will bring that with me because I did go through it faster than they really wanted me too.

Mindy

Too much too soon and migraines still here

I tried again to go down on my steroid dose again, and it is too much too soon. I just had to give a bolus dose of steroids in my arm. That does not feel the greatest still, since it still stings like the dickens.

I tried again to get into see my PCP today to see about getting an injection of something to help with this migraine, however they are still closed due to the weather. So I made an appointment tomorrow with my pain management doctor. I am not looking forward to the drive since it is over 15 miles away from my house.

I also work tomorrow and am praying that the boys will have school tomorrow. I don't think that I can deal with them for the whole day. Especially when they do not have cable or a house that has power in every room. Something went freaky when we lost power there for about an hour on monday.

Mindy

Migraine Migraine Go Away...

and dont come back another day. Ever!

Ice can go away for ever and ever too. We have had our first ice storm of the year, the second one of the season. I dont like ice, dont like to drive in it, fall on it, just dont like it period.

The story of the day is migraines. I woke up with one, went to the dentist with one, drove home on the ice with one while making two stops in the middle of the road to open the door put the car in park and puke my toenails up. I got home just in time to run to the bathroom again.

Tomorrow if I feel this bad I will see if the PCP's office can fit me in for a shot of some demerol and phenegran. I dont want to have to drive on the ice to the other side of town to go and see my pain management doctor and get an occipital nerve block. If the doctor's offices are even open tomorrow.

Mindy

Just tired

Overall today wasnt a horrible day but really wasnt that good of a day either. Mom hasn't felt good since she started the metformin, a little bit of comic irony, she didnt understand that it could make me so sick when I was on it, and know she is getting the lovely side effects that I had when I had to take it.

I have been in a bunch of pain today, and am running a bit low on my pain meds. Thats what will happen when you have to take an opiod pain med which is not nearly as effective as a triptan for a migraine. Or for severe back pain that doesnt respond well to your other meds.

I will just be trying to make what I have last as long as I can, and I have got to make sure that I have the right amount of stuff when I go back into the doctor's office just in case they check me out since we changed a bunch of stuff at my last appointment

I have got to make a change to the follow up appointment because it is scheduled for the same day that I have the next nerve ablation procedure and the meds that are given for the sedation make it where I would be absolutely useless at the appointment.

Mindy

Oh what to do what to do

I am not sure what to do any more. If I dont take one medication my blood levels drop lower than what the nephrologist wants me to be at. But the levels are still above the low limit of normal.

The medication is hard enough as it is, Polycitra. It is brutal on the stomach and gut. Reflux, GI difficulties, and retaining fluids.

I am not sure what to do or what decision to make with regards to taking the medication. There are risks if I take it and risks if I dont take it. Ultimately the decision is mine and mine alone to make. I mean if I take it I have got to send the rx to the mail order pharmacy because it is so dang expensive. But I dont have any room much less to store 16 bottles which is a months supply 48 bottles is a bit too much even for my historically large home pharmacy.

Mindy

Hi/Low Thursday

My high for the week is the fact that there was so many people who prayed for me yesterday as I had yet another procedure done to try and manage my medical issues.

Low is the fact that 1 of the kids I took care of threw 2 different temper tantrums that involved hitting and kicking me. The temper tantrums were both over 30 minutes in length which it has been a while since he has been that violent

What to do now?

I am trying to make the decision as to whether to sign up as one of the families for C.O.L.E.'s foundation.

It is originally started to support families with cancer diagnoses, but there are families with other diagnoses who are part of the adopted families group.

Getting their support was of great encouragement to me yesterday. When the sedation did not quite work as well as planned holding on to the fact that there were people all across the nation who were praying for me. Helped me to get through the procedure.

I will be praying for peace with regards to the decision and all that good stuff. I covet the prayers when I am going through a difficult period of time and that is something that no one can get enough of, prayers I mean

1 down 1 to go

One procedure down and one more to go in 2 weeks. that one should be interesting since I am scheduled for my 1 month follow up with pain management that day also. I am going to have to reschedule the appointment because I am useless for about 12 hours after I get the consious sedation drugs.

Today the procedure went well. My only complaint was they did not give me enough versed to be out of it enough. I only got 2 this time and got all of the fentanyl that was available.

It was so refreshing and encouraging to pull up COLE's Foundation and be able to know that there were people all around the world who are praying for me, the doctors, and the procedure that we had today.

I am getting ready to go and lay down again and get some sleep.

This is just a few thoughhts on the adventure of today, will write more later

ARGH!!!!

How many phone calls does it take to get 2 prior authorizations done on medication.... right now I am sitting at 2 this week, at least 3 last week, and 3 more the week before. One phone call I actually spoke with a person who said that she would take care of it that day, that was a week ago tomorrow. I have left a message on the supervisor's voice mail and have yet to hear anything from her.

Surprisingly the only person at that office who has done their job in a timely manner is the surgery scheduler.

I have lost all faith in them doing their job and have made an appointment for tomorrow to get this taken care of and see about getting injections done in the side of my head.

Thankfully I recieved a prescription for a stronger pain medication at my last appointment that has been my saving grace when dealing with migraines without an abortive for the problem.

Melinda

The new news

Attention Attention!!

Hell has officially frozen over. The scheduler for my pain management doctor, actually did her job without me having to bug her to do it. I called her yesterday to try and get information and I almost died of shock when she said first that she had been working on my problem, and second that she had both scheduled.

Now the lovely procedure is called a radiofrequency nerve ablation. There is a funky name rhizotomy, I think is how it is spelled.

I have to show up on thursday at 6am at the hospital, do the normal weight, height, and pre op questions.

They will then start an IV, thankyou God for the EMLA cream. One of the set of nurses is insistent that the line be started up in the wrist/hand area the other set does not care if it is started in the forearm area.

I will then be wheeled back into the pain room. move over to the table, the doctor will then come in say hi love ask which side for a quick reminder and then push the happy medicine. The happy medicine is most commonly fentynal and versed. The doctor will use the fluroscopy x-rays that we generated in the previous 2 procedures to verify where he needs to go. After he is done I will wake up enough in back in my day surgery room where I started the day out. The goal for me being able to leave is drinking something without getting sick.

Tomorrow and Sunday I work. and on thursday the lady I work for is going to have to switch her schedule at work because I have got to have this procedure done.

Mindy

No not me

I got up this morning with great plans. Only to be soured by 2 bratty kids. I made them a nice little fruit plate, expected them to eat it, no not me would be surprised that one ate like he was supposed to and one didnt.

Got them to school, came home to get my breath, then went to the eye doctor. I didnt play any games on the new resident that I had today, no not me. Had to make him laugh sometime somehow just for the sake of doing so.

I picked up one boy, learned from trial and error to always check his bag to make sure he has his conduct folder. No not me I wouldnt make him go back and get it, no not me.

I wouldnt sit and watch the same funny moment over and over on the dvr just to have the fun of laughing, no not me.

I wouldnt go up to the hospital to get my mom without a bra on, no no way not me.

I wouldnt tell a customer service representative that she is an abosolute idiot, and yes last time I checked I do know how to do simple subtraction since I graduated highschool. No I am way too nice to be caught doing that.

I wouldnt know from experience that the only way to get any decent help from said mail order pharmacy company is to call at 2 or 3 am.

I wouldnt be typing at almost 1 am when I have to be up at 5 for the second day in a row, no I am way to smart to do something that stupid.

No not me monday version 1.2

Not Me Monday

I did not not fall asleep until 6:00am because I was hurting no not me

I did ignore the call on my cell phone from my friend because I knew there was no way I could listen to her loud voice, no not me.

I am just plain tired...

And fed up. I am highly suspicious that I have been leaking spinal fluid out of my ears and nose, it is a clear watery fluid that is known to taste sweet because of the glucose that is contained in the spinal fluid.

I have diagnoses and specialists form just about every dang body system. The only ologist that are not included are cardiologists and immunologists. Included is GI, ENDO, HEM/ONC, OB/GYN, REPRODUCTIVE ENDO, NEURO, NEURO SURG, NERO OPTHO, DENTIST x2, PULMO, PSYCH, NEPHRO, ENT x3, ANSTESI.

I am fed up. Nothing seems to be working. My migraines are out of control, GI is screwed up and miserable, ENT is extremely painful, ENDO is just generally crappy, and my back pain is breaking through all my meds.

What I need is as follows:

1. Food allergy testing
2. Increase and/or change of nausea med protocol
3. Change in muscle relaxer
4. TENS unit
5. Addition of stronger med for migraines when they dont respond to the Treximet the have driven me to want to go to ER to get some relief havent because the wait, the lights, and the noise make it worse
6. Something to help me relax so I can rest decently, thats hard when you hurt
7. The Prior Auth done on my Imitrex, its been almost a month
8. A fix now for the ear pain, or at least a plan to fix it with a specific timeline...the ear infections are getting real old
9. Testing and a fix for the fluid leaking
10. a blood sugar meter that has a light, make it easier to do the 2am checks while weaning the steroid to the apppropriate physiological dose.
11. Something to slow down my gut, thats a weird request with gastroparesis
12. A fix to the ear problems so I can tolerate the CPAP that I need for my sleep apnea
13. Reduction in my pressure headaches that have increase due to the increase in GHT

This list of 13 things are what I desprately need to improve the quality of my life. It is now 6:15am and I still havent been able to get comfortable enough to sleep.

I have been fighting chronic illness since I was born and I need some relief quickly because I am getting tired and sick of fighting to have some level of functioning.